Family breaks GoFundMe donation record with campaign to save daughter

Compiled by Emily Hales , Deseret News National Edition

Published: Sunday, Aug. 2 2015 12:43 p.m. MDT

The O'Neill family showers daughter Eliza, 4, with leaves — and love — as they play in the park. The O'Neill's are fighting to raise enough money to fund expensive treatment for Eliza's disease, Sanfilippo Syndrome. (Courtesy of the O'Neill family)

A young family reached out for help in saving their terminally ill daughter, and the Internet responded.

In July 2013, 4-year-old Eliza O'Neill was diagnosed with Sanfilippo syndrome, a fatal genetic metabolic disease, the Deseret News reported several months ago. Her only hope lay in a drug that had not yet been tested on humans. Four months after the diagnosis, her parents, Glenn and Cara, started a GoFundMe campaign to help raise the $2.5 million needed to fund the clinical trial scheduled for the end of the year, according to their GoFundMe page.

With a month to go until the end of the fundraiser, the O'Neills have raised $956,834 in donations — the largest amount ever raised by a GoFundMe campaign.

The previous record was $808,845 that was raised for Jeff Bauman, a victim of the Boston Marathon bombing, according to Good Morning America. GoFundMe has raised more than $310 million for various personal causes, as those in need of financial support reach out to strangers via the Internet.

The O'Neills have used several fundraising techniques, including 5K runs and dance-a-thons, "but most of the money donated is the result of two videos the family made," reported Huffington Post. The money raised so far is enough to cover the production of the medicine for the trial, but the family needs to raise $1 million more by the end of June, according to their campaign website.

"With time ticking, we now move to the final goal which is ensuring enough funding for the actual clinical trial by October. We need to raise $1 million more, and we have some ideas how we can get there," Glenn wrote June 6.

The record-breaking amount of money came to be in part because of the O'Neill's understanding of the Internet. When his daughter was first diagnosed, Glenn Googled "how to make a viral video," according to Good Morning America. With the help of filmmaker Benjamin Von Wong, the O'Neills have made two viral videos: one telling Eliza's story and introducing the fundraising campaign and another showing a personal plea from Eliza's 7-year-old brother.

The videos directed concerned strangers to the family's GoFundMe page where they were encouraged to donate.

The combination of emotional videos and social sharing has brought Eliza's story to the attention of thousands, who donate what they can to the family, Huffington Post explained.

"It's all from extraordinary people donating whatever they can afford," Glenn told People magazine. "People have reached out saying that they're out of a job but they want to donate $10."

Crowd-funding campaigns have allowed people to help complete strangers without much inconvenience, and there are numerous success stories, according to the GoFundMe website. However, the system isn't perfect. GoFundMe takes an 8 percent cut from the money raised by each campaign, and there have been fraudulent campaigns, according to NPR.

CEO Brad Damphousse "has an internal team that vets every page, looking for hucksters, and shuts them down," NPR writer Eliza Barclay reported. "One user of GoFundMe managed to fool the company — along with his friends and family — and raised $2,000 around a false claim that he had cancer."

The funding website encourages transparency and communication between donors and donees so that people know that they're sending money to real cause, and the websites allow donors to see the results of their donation.

The O'Neills have less than a month to reach their goal, but considering the support they have already received they are hopeful the goal can be met.

"Never before has the power of social media, crowd-funding, and primarily the kindness of people around the world had a more direct impact on stopping a deadly childhood disease," the O'Neills wrote on their page. "It is happening thanks to you!"

Emily Hales is an intern on the national team, covering issues facing families in the United States. She is a communications major at Brigham Young University.